Archive for February, 2013

My senior year of high school 1991. Almost ready to escape the cage.

My senior year of high school 1991. Almost ready to escape the cage.

Disclaimer: This is a negative post. The negativity is a result of my own mind, thoughts and actions, MY OWN ISSUES. No one is responsible for my negative attitude but me. AND…As I sit here writing this post Ella’s fabulous teacher and paraeducator just texted me an incredible photo of Ella in the classroom surrounded by her peers helping her with a school project. 🙂 

Sometimes I have a hard time taking Ella to school and dealing with the “ins and outs” of having a severely disabled kid in the system. I knew this would happen because I have issues.

1. There are many, many parents at Ella’s school who I have connected with who are wonderful, encourage inclusion and treat Ella and me with love and compassion. However at times I’m uncomfortable interacting with other school parents. I don’t like the looks of shock and pity that I get as I am struggling with the stupid heavy doors to get her in the school. Please don’t stand there, help me with the door. Give me a smile. I am aware of my difficult situation and looks of pity are not helping lighten my load. The whole yucky situation makes me feel like I am in middle school again.

2. I hate that Ella is mistaken for the other severely disabled child in the school all of the time. I hate that when I correct people they act hurt and walk away before I can introduce Ella to them.

3. I hate that I had to have a meeting with administrators about the fire drill/emergency evacuation procedures for Ella. The fire marshal suggested that if Ella is on the 2nd floor during an emergency she could be left in the stairwell until the fire/police arrive, since the elevator cannot be used during an emergency. This suggestion is completely unacceptable to me and frankly makes me sick to my stomach. Of course the school administrators agreed with me and were just as sick to their stomachs about the fire marshal’s suggestions. We agreed on another plan to get Ella out of the building quickly and safely. But really, leave Ella in a stairwell, I don’t think so!

4. I hate that I feel guilty about Ella’s wacky sleep schedule. I feel bad when she sleeps till 1:00 and I can’t get her fed and into school before the end of the day. I hate having to call and explain that Ella had another bad night and won’t be in today. Of course the school completely understands and has been nothing but supportive of Ella and her needs. They have seen that when we let Ella sleep her own unexplainable schedule she remains healthy and when we force her to wake up and go to school she gets sick. They have stated to me over and over that Ella’s health comes first.

5. I hate that I hated school as a kid. I hated the smell of the building. I hated the fluorescent lights. I hated the confinement of sitting in a classroom. I hated that I had to be quiet. I hated that I had to leave my Mom. I hated that I didn’t understand math. I hated the cliques and social games. I hated it all. It wasn’t until college that I began to love learning. In college, I spent most of my day in a dance studio and took classes on art and music. I got extra help in math and learned to tolerate it. Of course this is not the case with Ella. She likes school. She loves the interactions with her many friends. She loves the stimulation provided by her teachers and paraeducator and, dare I say it, she likes being away from me for a few hours (UGH!) I hate that I feel I may be projecting my discomfort of school and my negative experience on Ella. I wish that I could approach Ella’s schooling with equanimity and not bring my past baggage into her present experience.


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10 years, 10 changes.

IMG_5931As I was driving my minivan to Costco this morning I was thinking about all that has changed in my life in the past 10 years. You see this week 10 years ago I was just about two weeks over due with Ella. I was living in a fixer-upper duplex in the Roland Park neighborhood of Baltimore City. I drove a sporty Toyota, ran 5 miles a day, slept 10-12 hours a night, worked out at the gym daily and took yoga classes a few times a week to keep my body fit and beautiful, showered and washed my hair daily and wore make-up. I was cocky and confident that having a baby wasn’t going to change my lifestyle.

10 things that have changed in 10 years

1) My sleep patten. I never get more then 4 hours of uninterrupted sleep.

2) My ass. It’s lower, it’s wider, but it still looks pretty damn good. 🙂

3) I live in Vermont and I love the snow. I drive in the snow, I ski in the snow and I am sad when it melts. As a native Marylander this is big, snow in the south is a pain, everything shuts down and no one knows how to drive in it.

4) I never go to the gym. I lift, carry, hoist and squat with Ella daily.

5) I practice yoga 6-7 days a week. Yoga is how I care for myself–my body, mind and spirit. It’s the place where I am reminded to be kind to myself, laugh at myself and just breath. I even get to take a quick two minute shower after class.

6) I stopped trying to control things (well mostly, still emerging). As John Lennon wrote, “Life is what happens to you while you’re busy making other plans.”

7) I’ve stopped expecting people to act a certain way. I no longer expect people to move out of the way of Ella’s wheel chair, hold the door open for us or not park in the handicap parking space. Now when people do these things it’s a pleasant surprise.

8) I don’t drink anymore. While pregnant I dreamed of the glasses of wine I was missing. Then when Ella came home from the NICU I drank a lot of wine, too much wine, a bottle a night for 3 years. It wasn’t good, I was self medicating and feeding my depression. I quit drinking and have never looked back.

9) My face. I will quote the Indigo Girls here. “With every lesson learned a line upon your beautiful face.”

10) I am a mother, I am a good mother, I am a great mother. I am not perfect. I make a lot of mistakes. I get very angry. I feel like screaming a lot. I scream a lot. However, I can always calm down, get it together and collect myself before I care for Ella. I am a caregiver for a severely disabled child. I manage her daily and medical care. At ten years old I still change her diapers, bath her, dress her, spoon feed her and rock her to sleep at night. I wonder it that will ever change.

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